Haven't been here in a while-confused

Diseases & Conditions Breast Cancer
1
Hi all-I pray that you are all holding up and plugging along.  A while back I had an abnormal mammo, stereotactic and a excisional biopsy for what is lobular carcinoma in situ..according to the docs, not cancer, but pre-cancer.  I've seen two oncs about further treatment and they both recommended Tamoxifen.  I am on the fence about whether the reward outweighs the risks.  I am higher risk than a woman who never had this, but the side effects sound almost as bad as seeing what happens. (that is scary enough I guess)  The other thing is we may want to have kids..I'm 38, so maybe one kid, but if I go on Tamoxifen (5 years),  that's that.
 
I could go an try to have a kid, then go on it afterwards..but then the whole risk vs reward thing comes back again..
 
Has anyone been in my shoes?  I would also welcome your opinions...and for those on Tamoxifen, how do you feel?  What are you noticing side effects wise?  Have you gained any weight?
 
Thanks!
 
 

Susan

2

Your concerns are understandable!  My advice is to not decline Tamoxifen JUST because of how the side effects might be. Whatever you have heard may or may not apply to you, all of us are different. Some are so severely impacted with side effects that they cannot tolerate it, and others hardly notice a thing.  Ask the onc his/her opinion on how much benefit you may get from it....will it reduce your chances of recurrance by 5%? by 8%? By 2%?  How + were your hormone receptors?  Ask the onc if you were his daughter, would he feel very strongly in favor of taking it?  Then decide how important it would be if you fell into one of those percentages.

You are on the fence regarding a pregnancy...what if you went on Tamoxifen for 2 years and then got PG....how much benefit would you get from a shorter duration? And if you skipped Tamox and then got a recurrance, would you blame yourself?  If you want to get PG now, that is a different story and is a very personal decision....if it were me, I would find out the potential for risk of recurrance and the benefit that Tamox would offer. 

I am 36 and just finished my 5 years on Tamoxifen, I was one of the lucky ones with minimal side effects. I did have weight gain, slowly over the 5 years.  But it is a small price to pay if it helped my chances of survival. I had no other noticable symptoms.  Good chance that you will have minimal side effects too.

Good luck,

Lori

 

3

Thanks Lori,

I am more concerned about the uterine cancer, blood clot thing than anything.  According to the onc (whom I like very much) he said that lobular carcinoma in situ is usually estrogen +.  He says that currently I am at a 2 out of 1000 chance of getting uterine cancer, with Tamoxifen it goes up to 3/1000.  I have a 15-30% chance of having breast cancer without Tamoxifen.  With it, I don't know but the odds are better of course.  I asked him to take off his MD hat and put on his father hat, and he told me he would recommend it.  I also asked him if I were his daughter and I wanted to have a baby if he would advocate me not going on it until after I had a baby. He said that would be ok, although there seems to be some talk about the risks of being pregnant when your estrogen levels go up in relation to BC.  He says there really aren't enough studies to say either way.  If I go on it and go off in a few years, I would have to wait a while until it gets completely out of my system before I conceive.  Let's face facts, most likely it will take me a while to conceive at this point in my life although I could get lucky.  As I get older the chance of me having BC go up just like any other woman but more since I've had a pre-cancer scare.

Did you have BC or pre-cancer?  I'm also reading about how Tamox is more beneficial for those you have had BC. Not too many articles on pre-cancer benefits.  I understand that I am lucky right now and I sure don't want to tempt fate.  I have so many emotions going on right now. My DH and I had the long baby talk last night and he said that if he could have the baby for me, he would.  I guess the other choice is adoption, but it's not my first choice.

If I actually had BC down the road and I opted out of taking Tamoxifen, I would probably be devastated knowing I could have taken steps to prevent it. I'm sure other ladies reading this thread think I'm nuts.  Last night on the phone my mom told me that she wants me around more than a grandchild.  When she said that I almost lost it.  My parents have been waiting a long time for us to have children.

 

Susan

4
Susan we have a lot in common. I did have breast cancer, stage IIA, diagnosed at 30. I was strongly ER/PR+ which is good. As for the risk of cancer recurrance with pregnancy, I have heard of women who went on to have normal pregnancies and remained cancer free, and I know of 2 people who were ER/PR negative (so the hormones should not have been a factor) who had recurrances after the pregnancy and are stage IV. My onc and rad onc had said that there is no reason I could not try to get PG, and that the jury was still out on the risk of PG after BC.
They also say that after ending Tamox, you have to wait 3 months to try and conceive.

In my case, I was single not even looking at pregnancy, so Tamox was never not an option. I am now in a relationship and we have talked about children, but I am not yet married so again, any pregnancy is in the future still for me.

And my friend who was 40 when she conceived did so very easily, so it is not always hard to do at the "older" age.

Some do consider the risk of blood clots and uterine cancer as a deterrant, and some have had problems with thickening of the uterus, but I was told that the benefits far outweigh the risks for me. It is individual though, and no one can say what you should do.

And my Dad made the same comment too once, that he;d rather have me than an unborn grandchild at this time.

Johns Hopkins has an ask the expert website, you may get more info there. You send in the question, include as much info as possible, and then they will respond within a few hours.

Keep talking it out and go with your heart...
Lori

5
Thanks for listening..and responding..
Today I can't seem to get a grip on myself...tearing up just thinking about it.  I will try to go on the Johns Hopkins website.

Susan

6

Hello Susan! Big ((((((((((((hugs)))))))))))))) from Mo. Don't worry about "tearing up and not being able to get a grib on yourself". You need to feel just that way. Don't hold the tears back. You'll feel much better once you let yourself cry. I couldn't take the tamox but I know many women that have..all ages...and most have had very few problems w/ it. In fact, my grandmother took it when she was 83 plus rads, and had no problems. She lived to be 98! I know right now you are scared and confused and can't decide which option is best for you. The only advice I can give is to make sure that YOU are taken care of and get healthy. That is most important. Once you finish your treatment, then have that beautiful child. You won't have that nagging thought in the back of your mind..."what if...." Sweetie, we all know how you feel and what you are going through. This disease "sucks" and there is nothing fair about it. The one good thing is that new treatments are being made available each and every day because of the clinical trials that many of us have participated in. Take advantage of them and beat this disease. Then have a whole housefull of children and let us hear you say..."darn those kids. They are driving me nuts! "lol

Please keep posting and let us help you thru this phase.

Hugs and prayers....Deb

 

7
I had invasive lobular carcinoma stage I, no nodes, +ER, +PR, 1.6cm tumor.  I was able to have only radiation (thanks to the Oncotype DX test) and am on about the second month of tamox.  It hasn't been so bad so far.  I do have some night sweats, but I was starting to get those already prior.  I've still had my period twice while on it and I don't know if this is related to the tamox. or some gyn problems I was already having but both periods were heavier and more painful.  I'm planning a hyster with cystocele repair in the fall so then I will be put on aromatase inhibitors.  But I know how you feel about now wanting to raise your risks with it.  I was reluctant to take it until some of the ladies on here pointed out to me that the risks are small and the pay off could be huge.  I don't want to go through the bc again.  It changed my life and I am (I know this sounds corny) actually grateful for the change it made in me, so I think of the bc as a blessing.  But not one I want to repeat.
 
If I could have avoided having the partial mast by someone giving me the tamox a few years ago I would have ran to the pharmacy.  But I am 41 now (40 at dx) and done with babies.  So I can't judge what you should do.  Only you know what is best for you and your situation.  Listen to your heart.  And good luck!
 
Hugs,

Mia
 
Snowflakes are one of nature's most fragile things, but just look what they can do when they stick together.


-Vesta M. Kelly

8
You are all wonderful to care so much.  I guess my problem is that I don't have BC, but I am higher risk for it down the road since having this DX. I can consider myself lucky that this was found because the doc said that this is usually not seen on a mammogram unless it's a mass, by then it's infiltrating.
 
I have put this back onto my docs plate..all of them. I have Crohns too, so I have my gastro, gyno, onco surgeon, plastic surgeon (breast reduction) and my regular doc.  I am letting them put their heads together on this.  My husband and I have to make one decision.  That is whether or not to have kids..
 
My health is first and foremost, but somethings are not black and white.

Susan

Post Edited (Bluize) : 7/18/2005 1:26:37 PM (GMT-6)